What else could go wrong

[Kyrav]

Hello my fellow cfers. Im just going to jump right in, I'm 25 and I just finished my evaluation for transplant and found out I will be getting listed for both lung and liver. However, when I got a ct scan of my abdomen they saw some of the nodules on my liver do something called "washing out" which they said could be a sign of cancer. So about a week ago I had an MRI of my liver done and it is a small cancer. They said this wouldn't stop me from being listed but they want me to have a procedure to, the doctor I talked to, said "burn away the tumor". Im not really scared about the cancer part because I know it was only caused by my cirrhosis.
The other thing is that during my evaluation I was told that I need to have a surgery to help stop my acid reflux, but the surgeon doesn't want to do it before my transplant because he doesn't think I would do well during or after.
So I guess the reason I'm writing this is because I'm just getting so irritated and stressed. Its like one thing after another is coming up that just seems to complicate things further. Has anyone had to do any of these surgeries or procedures before, whether it was all at the same time or not? I feel like I just need to hear from someone that's done it, and that it is possible to get through so much. I usually don't doubt how strong I am or that I can't handle something, but this is getting to be a bit much even for me.

 

[TreasureGoddess]

Good luck Kyrav, I think my son's whole life has been one more thing, and one more thing and one more....I'm sure you've had the same experiences. I know there's a lot of people on here that have gone through transplants, plus additional issues, so hoping they get you good info. I'm just thinking about you and sure sending healing and helpful thoughts.

 

[BreathinSteven]

Hey Kyrav... I'm sorry about one thing leading to another... I'm a CFer like you, and I know that often seems to happen with us... Sometimes we're on autopilot and just cruising along, watching the dials and hoping we're on course -- then suddenly something goes haywire, we have to grab the controls and hope the beast doesn't crash & burn... Sounds like you're on manual controls now... I had a double lung transplant 13+ years ago -- last year I subsequently had a kidney transplant... My wait leading to my lungs I was trying not to let the beast crash -- but I've had a lot of good years on autopilot too... My understanding on the liver side is that cancer doesn't disqualify you from transplant, as long as the tumor stays under a certain size. I imagine your doc is trying to ensure your tumor(s) stay under that size while you wait for lungs and a liver... And having a "fundoplication" surgery for reflux is getting quite common pre-transplant, or shortly post transplant. There have been findings that reflux seems to be a major contributor to rejection -- don't want to plop new blowers in and have you trash them aspirating stomach acid into them!!! I know we often have a say in what happens and when -- but I usually try to let my physicians & surgeons guidance weigh heavily in the decisions I make... I would think they'd have a strong idea of what you can take and when... I hope some people chime in about the fundoplication procedure - a few centers now require that when doing lung transplant (but I don't know whether it's before, during or after...) I hope your ride gets smoother -- I hope you don't encounter too many more "what else can go wrong" moments... And I hope that, when you do, you can deal with them one at a time and get through them... I hope you get the lungs and liver you need soon -- and I hope your journey afterwards is as amazing as mine has been... Love, Steve

 

[Dowling]

My mother had fundiplication surgery for acid reflux and it came with some major hiccups so to speak.

 

[sugarcookie]

Kyrav, I am sorry to hear about your "one after another problem" with your transplant eval. I am having my first meeting with the transplant team and not looking forward to all the tests either. I don't have any good advice since I am just starting my eval, but I can relate to what you said about how you don't doubt how strong you are, but this is some hard stuff to deal with. Just take one test at a time. One day at a time and look at the big picture with a reward of new lungs at the end.

 

[azdesertrat]

I could see how life really sucks right about now. Please, don't ask 'What else could go wrong?' Believe me, there is plenty more can go wrong. Please, just put one foot in front of the other & keep on truckin'. I think about 85% of taking on 'The Beast' is your attitude. For whatever reason, I've been blessed with a fantastic coping mechanism. If I could give you anything, (besides The Cure) that's what I would give to you & ALL CF'ers. My Wife & I have a little saying, 'All you can do is what you can do.' Basically, it means you just do everything you can & that you're supposed to do & if that aint enough, touch shit. Usually, it IS enough. Best of luck to you. Please, keep your chin up & don' let this crap get you down. I know that's easy for me to say, I'm having a pretty easy time of it for now. Believe me though, I HAVE been there, done that. Our best to you. May God bless & be with you in your time of trouble.

 

[LittleLab4CF]

You seem to be worrying about the pre transplant checklist. I wish I could suggest a solution for this, but I also wonder why one can be done and the other not. If you haven't gotten a satisfactory answer why they can't do the second surgery before, you might challenge their call. Transplants have rigid protocol in part because it isn't difficult. When something novel comes up, like asking if they can both be done prior to transplant, doctors have to consider your personal wishes. Maybe they can do both. If they can't you will know exactly why and you will be part of that decision at least.

A friend of mine, non CFer and non smoker, was diagnosed with esophageal cancer. Determined operable, he went through several preparatory surgeries and procedures. The consequences of radiation therapy and the removal of salivary glands were being discussed when the doctor asked if he had scheduled his dentist. He asked why he needed a dentist, he hadn'd heard about needing one. He was to have his teeth preemptively pulled because his mouth would be forever dry after the procedure and therapies. It almost was a game changer for my friend. It was a shock and though he wasn't the end of the world, it was a last straw for a while.

As surgical medicine advances, patients can be caught in the rush. From an abstract idea, you are beginning to touch and feel your transplant heading toward you. A recent post about transplant emotions brought up issues of excitement and anxiety just at the first stages after being listed. This was incomprehensible and overwhelming so you are closer yet. This has got to be boring, beginning at high voltage anticipation it keeps getting more intense.

Best Wishes,

LL

 

[Kyrav]

Thank you all for your insight and words of encouragement. I am by no means about to let one more thing bring me down, like I said in my original post I was just irritated that there always seems to be one more thing.
As for the surgeries, I cannot have the acid reflux surgery before transplant because it could complicate the blood flow back to my heart. Right now my liver is so bad that the blood that should go through it doesn't. Instead it takes the path of least resistance, which is through my stomach and throat. They don't want to clamp it off and reduce the blood flow. (If that makes sense) So it will be a few months after my transplant.
The cancer surgery I don't know about yet. I'm supposed to be hearing from the inter-something radiology department soon. From what the doc was telling me on the phone though, it seems like it will just be a laparoscopic thing. Guess its time to do a little research.

 

[MikeInMT]

I know how you feel. I had one thing after anither right up till transplant. I can't say it was easy or not stressful. It is enough to drive a person insane. But what I can tell you every bit of it is worth going through. When you wake up from transplant and you can take in a deep breath and not go into a coughing fit, every challenged you went through means nothing. That first breath is the begining to being able to experience life in a way we never have been able to.